Managing MAC without antibiotics

I'm very sorry for your loss. I two have lost my husband and son of 26 years. It is beyond devastating. I only have my daughter who lives in a different state and unable to help. I have had MAC and bronchiectasis for about 10 years. Because of 5 autoimmune diseases I am unable to take the Big 3. My pulmonologist is also upset with me for not taking them. 2 of my other doctors have agreed I could never tolerate them. I do the percussion vest and 7% saline twice a day. As of my last 2 visits my condition has not gotten better and has not gotten worse. I do have hymoptysis as a result of needing to be on blood thinners. I do have a great deal of fatigue but, need to exercise more. I believe you just need to do what you can. It is difficult not having support, but again you can manage. If your doctor hasn't offered airway clearance devices, ask for a referral to pulmonary rehab. They can instruct you on devices to help. Remember not everyone who does the big three get cured. The vest, aerobika and 7% saline is working for me. I hope this helps, and good luck.

Hello i am so sorry to hear all this. All in all if you have children or you don’t, you are the one who has to go through the day. My advice, from experience, is ask for things that would help you. My doctors did not mention saline solution or Aerobika. I read about them here and then asked and asked until I got them. Everybody is different but I was also terrified of the antibiotics but I decided to take them and go by the day- tired, sleepy out of a sudden, hair falling out, leg pain-but surviving, so if the doctors say you need them may be at least try and don’t give up. My best wishes

I've been on all 3 antibiotics for 3 weeks and my rheumatoid arthritus has flared up so bad - I'm in such pain - is there a correlation to these medications and the flare?

Suzieh, I was the opposite, my joint pain (from a high white blood cell count) got better once I started antibiotic treatment.

Dear Desperada, My heart goes out to you. I am very sorry for your loss. I totally understand where you are coming from in terms of the antibiotics. I, too, am very apprehensive about them and am (thus far) choosing not to go that route and am accepting of the possible consequences. I live the healthiest life I can - walk my dog, love my family/friends, enjoy the small things in life - and appreciate every day.
As for your doctor: One of the foremost medical principles is "to do no harm." What sounds like scolding goes against what a doctor stands for! This pulmonologist appears to lack compassion and understanding of the complexity of your situation. I am a retired social worker who worked primarily with homeless Veterans. One important thing I always kept in mind is to respect a person's right to self determination. Bullying someone into doing what you think is best is counter productive and can be quite damaging to an individual, as it has been to you. You deserve better than that. I know it is hard but let this doctor's harshness roll off your back and do not feel the need to apologize for doing what feels right for you. I wish you the best of luck. Please know we are all here for you.

Hello Desperada,
I'm so sorry for your grief and health problems. And I completely understand your resistance to the antibiotics. I have MAC and bronchiectasis - AGAIN - after being on the big 3 antibiotics for about 15 months several years ago. Then I was pronounced "cured" after consecutive scopes and cultures. This time I told my pulmonologist, who is very understanding, that I was done with antibiotics and scopes. I have chronic kidney disease and believe that those long term antibiotics damaged my kidneys, although I can't prove it. I also have COPD and am using inhaled Stiolto Respimat daily. The pulmo gave me samples of different kinds of inhaled med and Stiolto is the best. (I don't want to take steroids because of bone loss). Because I don't have any drug insurance (long story), I get my Stiolto from Canada Pharmacy. It is less than half the US cost, even with Good Rx and is the exact same medication.

I just turned 80 and I do yoga poses in my bedroom every morning for strength and balance. I firmly believe that the yoga breathing (belly breathing) has improved my lung function. It should help with your headaches, too, and with sleep. It's impossible to feel stress when you are breathing deeply and "watching" your breaths. I also walk (using my Albuterol inhaler first and putting on a knee brace) for at least 30 minutes every day that it's not raining , freezing or bad air quality. I only nebulize 7% saline if I've been coughing. And I follow up with Air Physio for airway clearance. My pulmo says I am "moving air well".

So, despite these "handicaps", and with optimism, life goes on. You are only 71 and should have a lot of life left. Join a book club, take a yoga class - ashtanga or hatha are not aerobic and will help you relax. Find something you enjoy where you can socialize and distract your mind from your pain and grief for a while. Remember, MAC is just one more thing we won't die of; it's something we'll die with. Practice good lung hygiene with deep breathing, your walks, airway clearance. And find another pulmonologist!

I to have refused the treatment due to the side effects. I do know someone that did do the 3 antibiotics which destroyed her kidneys. Life is to short when you are up there in age just like me. I am 71. Don’t need more problems when I am in good health otherwise. Even my ID doctor said he would rather not treat me. He said if I was younger maybe. He has quite a few patients with MAC who have gone 20 years plus without taking the treatment. So I will take my chance. I walk 5 miles every morning, do my vest, drink a lot of water and do huff coughing. Never have been able to cough up mucus. Doctor said that can happen not everyone will cough it up.Could do more damage by trying to force it. Was diagnosed in 2021 and so far CT scan has only changed for the better. I’m not bragging because I am aware things can change but these are the chances I am willing to take.

Thank you everyone for your posts. I currently saw my ID doctor and really like his suggestions. I was also told that I do not have any cavities. The size of the area is 7.4cm which seems really large but there were no cavities so I was relieved. They are on both my right and left upper lobes. But he said they don't look bad. So recommended that I do the nebulizer with saline only. He didn't want to start me on the antibiotics yet which I was happy to comply with.
Anyway, since this thread is basically for those who have MAC with cavities and bronchiectasis I will be leaving this site. But I truly appreciated everyones input. Thank you again and stay safe as the covid variant seems to be spreading quickly.

I have RA as well and I had to get off my RA meds (except for hydroxychloroquine) in order to boost my immune system to fight the MAC infection. My primary care doctor prescribed Low Dose Naltrexone as a possible aid to fighting RA flares during my MAC treatment. Still in the early stages but I think it is helping. I was on Humira which suppressed my immune system and unfortunately was one of the reasons I became susceptible to MAC. There’s lots of info online regarding LDN.

Mary Jane

Hey @desperada, I’m really sorry to hear you’ve had so much issue with medics - in Au, the public system is pretty much fraught with blatant neglect and patient blaming/shaming from what I have experienced, so I can definitely empathise with the situation and my heart goes out to you.
I have some mystery infection (have had for years - no doc listens long enough to consider a bronchoscope to sample the muck that’s rattling around in there), bronchiectasis, and chronic productive cough for 6 years (I’m 50 now). Dx’d with bronchiectasis by high res CT more than 6 years ago.
Interestingly, the long term antibiotics didn’t help after a while, and the side effects eventually made me stop (was on them for years).
I also have colitis (inflammatory bowel disease) with diverticulosis (have had diverticulitis and it’s unpleasant - turns into sepsis..), and occult bleeding..who knows where from.
Mostly anaemic, difficulty with malabsorption, complicated by MGUS which has now flipped into MGRS (monoclonal gammopathy of renal significance) because I’m now in kidney failure (stage 3a, apparently). MGUS/MGRS can progress to smouldering multiple myeloma (SMM) and multiple myeloma (MM). Without going into detail (because it’s is complicated), I now have many hallmarks of progressing to SMM besides the rest of stuff going on (as well as being immunodeficient due to the monoclonal gammopathy in bone marrow, leaving me susceptible to pathogens and unable to fight them without intervention - most lung and bowel infections I end up with sepsis and in hospital for extended stays). And I also live alone, feel exhausted all the time, and yet have to have the energy and wherewithal to advocate (read: argue common sense into medics born without it) for myself 100% + of the time. And run the house. And work as much as I can. And all that jazz. I’ve had pericarditis 3x in the last 4 months, which is a major annoyance to say the least. And I have some kind of growth in my mediastinum that causes pain when breathing (and again, no medic with the wits to make further enquiries as to what it is or what it means for my future).
I agree there’s better rights for animals at the vet - I’d dare say my local veterinarian would get sued by the state if they neglected an animal the way humans are neglected by those white coats in tall ivory…it’s more than once I’ve considered hiring a furry suit from the costume store and presenting down the vet for a bit of unbiased care - I’m just not so sure on the the use of the thermometer; that’s the only thing stopping me to date, however if I can work my way around that, then barking for help may just get me further then I’ve ever got while using words. Hehe. Silly, but true.
Now if I can just find a way for someone to listen regarding the last mri showing brain inflammation, and loss of brain mass, as well as multiple ongoing falls from peripheral neuropathy and loss of balance, I might just reduce the fracture risk with borderline SMM, while I cough my way through the day 🙂